I have cancer. And I’ll write about it as much as I fucking want
What people who blog about cancer don’t need? Other people telling them they’re wrong to do it.
It’s unusual — at least to me— when a husband-and-wife tag-team a subject with opinion pieces. So the publication of essays by Emma Keller (in the Guardian’s Comment is Free on January 8) and Bill Keller (in the New York Times on January 12) about Lisa Adams, an American woman who has catalogued her treatment for breast cancer via Twitter and a blog.
I hadn’t heard of Lisa Adams until this morning. While we’ve both been told we “have cancer”, my medical condition is light-years from hers. I have non-invasive bladder cancer that’s treated surgically. She has stage IV metastatic breast cancer. I have written a handful of times about my diagnosis and treatment. She’s written several hundred blog posts on her eponymous blog and thousands of tweets.
And yet, despite our many differences, here I am writing about her and about two people who have already written about her.
I’m going to try to keep this brief.
We all have experiences that shape us. Some can be seemingly insignificant and short in duration, and some can be jaw-dropping “oh my GOD” experiences that go on and on. And one of the things that often happens when you have an experience like that is that you seek to communicate that experience, by speaking to friends, or by writing about it, or in any way that feels right.
Emma Keller wrote, in her Guardian piece “Forget funeral selfies. What are the ethics of tweeting a terminal illness?”: (Note: Shortly after I published this essay, the Guardian pulled the piece “pending investigation.”)
“Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive? Is this the new way of death? You can put a “no visitors sign” on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch. Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?”
Her husband, four days later, wrote in the New York Times:
“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.”
Communication is a two-way street. We communicate to achieve the attention of others, but we also communicate because we have something that we believe DESERVES that attention.
Once we speak, write, draw, compose, or whatever we do — It’s up to the audience to decide how much attention to pay to our thoughts. But when I write, I write primarily for ME. Because I have something that I need to say. And I certainly don’t want or need the supercilious approval of either of the Kellers to encourage or discourage me from continuing.
I don’t know how much I’ll write about my cancer over the years. Right now, most of what I’d have to say is about its psychological effects on me. And for now, that’s something I don’t feel eager to share. If it gets worse physically, things may change. I may find myself writing more about it. Or less. But what I can tell the Kellers, and you, dear reader, is this:
The appeal of watching someone try to stay alive is the witnessing of human courage and spirit.
Is this the new way of death? No. Because someone I only knew online died online two and a half years ago. Derek lived and died with dignity, equanimity, humour, and courage. And that seems to be how Ms. Adams is living and dying.
The dignity of readers is based on their actions toward their fellow humans, not on whether they read a website or not.
In a world where charlatans abound claiming that changing my pH or drinking ionized water will cure cancer, Lisa Adams’s discussion of her experimental chemotherapy regimen is “raising false hope?”
Of course cancer and death is a part of the human experience. And Lisa Adams has every fucking right to write about it in any way she chooses. And if you don’t like it? IGNORE HER.